Thiamine Deficiency Testing: Understanding the Labs

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Thiamine Deficiency Blood test
It has recently been found that a number of individuals who have experienced adverse reactions to the Gardasil or Cervarix vaccines and some medications have had a blood test that indicated thiamine deficiency (TD), or its abnormal chemistry (TAC) in the body. This article reviews the methods by which TD or TAC can be detected.

Blood Thiamine – Vitamin B1 Concentrations

Measuring blood thiamine or B1 concentrations is the laboratory test that is commonly offered by doctors. It is only helpful in extreme cases and is usually in the normal range even when there is clinically demonstrable abnormal body chemistry. The reason for this is that thiamine does its work inside cells and has no effect outside them. When we get this vitamin from our natural food, it goes through a very important genetically determined process to enter our cells. There can be something wrong with this system so that even a dietary sufficiency will not be effective and the concentration in the blood will be in the “normal” range. When the B1 is inside a cell, it has to be treated by a biochemical process known as phosphorylation to become an active vitamin. Failure of this mechanism will result in a “normal” blood level but no vitamin activity. We therefore have to use a method that actually detects this “vital” activity.

Erythrocyte Transketolase: The Test of Choice for Assessing Thiamine Deficiency

Erythrocyte is the technical name for red cells. These are the cells that carry oxygen to our tissues and they contain a complex mechanism that depends on a series of biochemical processes, each of which requires an enzyme. Transketolase is one of these enzymes. Its activity can be detected by a laboratory test and measuring transketolase is the only way of showing that the activity of thiamine is normal. The reason for this is that all the enzymes in body and brain cells require one or more “cofactors” that enable the enzyme to function properly. Vitamins and some minerals are cofactors and that is why they are so important. We have long known that they have to be obtained from our diet, but the reasons given above make it clear that dietary intake may be normal and still result in poor function of the enzyme in question.

Transketolase requires two cofactors, thiamine and magnesium and the laboratory test is designed to show their deficiency or abnormal chemistry by detecting the activity of the enzyme. Because thiamine is vital to cellular energy production, its deficiency affects first the tissues that are the most active oxygen using tissues, the brain, nervous system and heart.

Method of Performing Erythrocyte Transketolase Test

First, the baseline (as it exists in the patient’s red cells) activity of the enzyme is detected by measuring the rate at which it synthesizes its product, the chemical substance next in line in the series of biochemical reactions that are referred to as a “pathway” to the final end product. This is reported as TKA and it has a normal range. In moderate thiamine deficiency the TKA can still be in the normal range but if it is low it indicates that the enzyme is not doing its job efficiently.

The next step is to repeat the test after the addition of thiamine pyrophosphate (the biologically active form of the vitamin) to the test tube reaction. If there is an acceleration of the product synthesis, it indicates that the enzyme needed its cofactor to become efficient in its job. This is reported as a “percentage increase in activity over baseline”. This is called TPPE (thiamine pyrophosphate effect); the higher the TPPE, the greater the deficiency.  A “normal” range for TPPE is allowed up to 18% and this was drawn from people that were supposedly “healthy”, meaning free of symptoms.

In essence the TPPE should be zero, indicating that the enzyme is fully saturated with its cofactor. If a person is (unknowingly) sensitive to sugar, this test may be abnormal and show the effect of sugar in that individual. This is because thiamine is vitally necessary to metabolism of ALL simple sugars. That is the reason why sugar caused disease is so common in our world today.

In order to test thiamine deficiency, one must request transketolase testing. Not all labs can perform this test and so many will substitute the simple blood vitamin B1 testing. This test is insufficient for detecting thiamine deficiency for the reasons stated above. In this case, you may have to advocate on your own behalf and find the appropriate lab testing service.

Additional Labs

Since the publication of this article, the US lab performing these tests has closed. We have just learned a lab in London offers transketolase testing: Biolab Medical Unit. As we learn of additional labs offering the appropriates tests we will post them here.

Health Diagnostics and Research Institute in New Jersey also apparently will test for thiamine pyrophosphate (TPP) and erythrocyte transketolase (ETKA), but these tests are not listed on their menu and have to be requested.

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118 Comments

  1. Dr. Lonsdale,

    Are you familiar with the Spectracell micro-nutrient test panel? They claim that testing white blood cells give a better picture of micro-nutrient utilization. I’m seeing with a physician who utilizes this test.

    We’ve looked into the New Jersey lab listed in this article, however, since they only do the ETKA, but no the TPPE, we are hesitant to order the lab kit.

    Not sure if I can put the Sprectracell link here, but I’ll try. Thank you for your work.
    https://www.spectracell.com/clinicians/products/mnt/

  2. Dear Dr Lonsdale
    Thank you for all the information you provide on this website, it’s incredible.

    I wondered if you are able to recommend any nutritionists in the UK specialising in thiamin deficiency treatments?

    I am 57 years old, female, and have been ill for 12 years, with what seems to me on reading your web posts classic symptoms of dry beriberi. My mother (an only child) and maternal grandmother had very similar symptoms and progression to me, my sister seems to be fine. The main initial symptom for me was complete heaviness in walking, and gradual loss of muscle strength and tone in my legs, to the extent I cannot walk unaided and rely on a wheelchair out of the house and stick in the house. Symptoms came on about 18 months after a hugely stressful period in my life, divorce and moving out of family home etc. This after being incredibly fit, active, engaged with life etc.and probably falling in to the “bright” category intellectually, getting a Masters degree etc I also wonder about the role of perimenopause in the timing of symptom onset, which would have been when I was 45.

    I had neurological studies done, which came back as “nothing further we can do for you” at which point I lost faith in traditional medicine and have been trying all sorts of different alternative approaches, with no improvement, just ongoing deterioration in mobility, energy levels.

    7 years ago I was diagnosed with endometrial cancer, had a full hysterectomy and follow up integrative treatment here in the UK of high dose I/V Vit C and photodynamic sonodynamic therapy.

    After trying various therapies for the ongoing symptoms, four years ago I consulted a nutritionist here in the UK who did a genetic test showing methylation problems, so we embarked on a program of trying to upregulate methylation. Gradually I became trapped in a spiral of increasing interventions, worsening symptoms, and rapidly increasing stress levels. To the point where I was experiencing night terrors, panic attacks, became unable to look after myself and hit a full blown breakdown. Since then,I have seen improvements from this low point but not full recovery and certainly no improvement in walking.

    I have been following a low inflammation diet (just mainly organic vegetables, small amount of fruit, and egg, meat or fish protein, and some sheeps yoghurt, no grains, sugars, alcohol, nightshades) and believing that I had suffered an acute dysautonmic breakdown, working on mind body techniques to reduce the stress response.

    We have also done adrenal stress tests, KPU test, Vit D and parathyroid, and an Organic Acids Test

    Symptoms include
    Extreme weakness and loss of power in limbs, started in feet and legs, now notice some weakness in hands
    Fatigue and lethargy, loss of interest
    Really extensive muscle wastage in legs
    Digestive problems, including diarrhoea and gas
    Really debilitating insomnia, including whole nights awake, often accompanied by strange internal buzzings and vibrations and slight palpitations
    Hair loss
    temperature regulation issues, sudden sweats, cold extremities and feel cold badly in winter
    Blood sugar problems, although those improved significantly after removal of sugar
    Anxiety and panic attacks, again improved since last crisis 3 years ago

    I am happy to talk to my current nutritonist about the thiamin, and I am sure he will have an opinion and maybe able to point me towards testing etc but he seems focused at the moment on tackling mold toxicity, and adopting a ketogenic diet as the way forward for me. And I am not so sure having read so much on this website.

    I could get the BioLab test done that you mention but Is there any harm in just starting to take the lipothiamin that your mention? I already take lots of supplements, including 750mg magnesium and magnesium chloride salts baths, 10,000 mcg biotin, a good multivitamin, B6 p-5-p, potassium, coconut oil, and bioidentical hormones, niacin, coq10, betaine HCL, digestive enzymes and activated charcoal.

    I apologise this is so long and rambling and thank you in advance for taking the time to read. I haven’t come across anyone with symptoms such as mine, and reading so many similar stories here has made me feel less weird. Thank you to all who have shared their stories.

    Many thanks
    Alison

    1. This is a typical energy breakdown. She has exaggerated sympathetic overdrive that strongly indicate lack of oxidation in brain cells. There is absolutely no harm in starting Lipothiamine although it is very likely that you will experience severe paradox that can last as long as four or five weeks. I would start with a single dose of 50 mg a day and wait for worsening of symptoms. Continue on 50 mg a day until the paradox is complete. When you start to feel better you can increase the dose and because you almost certainly have a genetic defect, push the Lipothiamine according to benefit. I have not experienced any toxicity from its use and you could go to 200 or 300 mg a day easily

      1. Hi Dr. Lonsdale,
        I am new to this website and new to thiamine in this discussion and in general. I am writing on behalf of our 27 year old son. He was diagnosed on the autistic spectrum at age 2 (PDD-NOS diagnosis at the time). He recovered quite well by the age of 5 and went through grade school, middle school and high school relatively normally. At the age of 14 1/2, he had his first gran mal seizure. He was put on tripleptal and took it…sometimes. He then had another seizure at 17 1/2 and was put on more trileptal. This seizure marked the increased onset of seizure activity which led to an eventual temporal lobectomy in April of 2013. After the surgery he has been mostly seizure free – especially in the last 1 1/2 years. Drugs prior to surgery were trileptal at ever increasing doses coupled with various other drugs which he failed including keppra and zonisamide. After surgery, he was put solely on Vimpat then added Trokendi about 9 months later and then finally Lamictal was added in June of 2016. In October of 2016, he experienced an acute onset of bilateral pain in his upper extremities. He was never able to give proper voice to his pain – it was very hard to understand what he was going through. He is a professional musician by training and was also doing menial office work at the time, so we just chalked it up to overuse. My husband is an orthopaedic surgeon, so we went about a total orthopaedic workup complete with PT focusing on his upper extremities as well as postural alignment. He also tried chiropractic and massage therapy (you can tell we have been desperate given an orthopod’s permission to have his son have chiropractic treatment!) No improvement with any type of therapy. In late November of 2017, he then experienced an acute onset of lower extremity pain while driving. He was barely able to meet us at a restaurant and has been incapacitated since then. He can walk by shuffling and most movement is painful unless at rest. He was briefly hospitalized in early December – admitted by his epileptologist – and underwent thoracic and lumber MRI’s with normal findings as well as and EMG. He was seen by a musculoskeletal neurologist (we live near an academic medical center) who had trained at the Mayo Clinic, and he recommended a referral there. His appointment isn’t until May 10, 2018. He was referred to a pain specialist for treatment. This physician requested a QSART test. His results were abnormal in that his right side had hemispherically abnormal results which then the physician said it was sympathetically mediated nerve pain. Two nerve blocks were performed with no change in pain. He has also had lab work done which was relatively normal except for low folate. We have been supplementing him with folate for the last 4-6 weeks. He is also in week four of a gluten free diet (his diet has always been poor and quite limited like many of those on the autistic spectrum). Today he is having an MRI of his brain which was my idea. My hubby and his neurologist say it is not warranted, but they’ve known me long enough to trust my intuition. I don’t know what results to hope for. I have posted his case on CrowdMed. A suggestion of Fabry’s Disease was offered. That was just last Friday, and it is now Monday. I am still wondering about this low folate and B12 and thiamine – what role, if any, could there be in this situation? I am not medical in any way but was married to my husband before medical school even started, so I have been around the block. I am a creative person at heart and am trying my best to help solve this medical mystery. Our son hasn’t been able to play music for a year and a half and can now barely walk. It breaks our heart. Please let me know if you have any advice, theories or intuition in this matter. Although this is a long post, I know it barely scratches the surface of his situation. Thank you so much for your time and consideration.

        1. I am interested. Please offer the following information. 1.What is a QSART test and what is meant by” his right side had hemispherically abnormal results”? I am familiar with asymmetry in the ANS. 2. I have some info on “extremity pain” and may be able to offer treatment. 3. Is sugar important for his diet and does he consume any alcohol? 4. Do you know your son’s IQ ? 5.Are there symptoms of dysautonomia? 6.Has there been any mitochondrial genetic testing?

          1. Thanks so much for your time and attention in our son’s health. I will answer your questions to the best of my abilities.
            1. (I just copied and pasted this from the internet) “QSART is used to diagnose: Painful, small fiber neuropathy when nerve conduction test results are normal. Disturbances of the autonomic nervous system, which controls the sweat glands, heart, digestive system, other organs, and blood pressure.” As I understand his results, abnormal results were manifested on his right side but not on his left leading the pain physician to call it “sympathetically mediated.” Two nerve blocks were tried on the right side about 3 weeks apart. They could tell they were in the right spot because his right arm was warm for a certain amount of time (that made no sense to me, but we were looking for the change and they seemed satisfied the right area was reached – my husband was able to attend that appointment). As of this last Sunday, his neck became acutely involved as well. He also experiences some allodynia.
            2. Any information or treatment offered would be enormously appreciated.
            3. Sugar…he has always had a pretty limited diet, but I wouldn’t necessarily say that he is a huge sugar addict. Certainly he has enjoyed sweets since he was a child. Since his temporal lobectomy, he has been on a low-glycemic diet (as prescribed by the epileptology dietician at our local state medical center, and it is kind of a strange diet but is supposed to reduce glycemic hits to his brain) and follows it fairly well though he does not eat many fruits or vegetables. As part of that diet he is to limit sugar when not combined with a fair amount of fat, i.e. cheesecake is fine but Skittles are not. He consumes absolutely no alcohol, and the few times he has tried it it has induced seizures or auras. The same is true for marijuana.
            4. I can’t say I know his IQ, but throughout school he was a decent student who is really, really bright but tends to excel in those subjects he cared about. His standardized tests scores throughout school were always in the 80s-90s percentile. He also was largely self-taught on guitar and tested out of some classes upon entering the Berklee College of Music in Boston. Despite his current situation, he is teaching himself coding and is hoping to go back to college for computer science.
            5. I didn’t know what dysautonomia until just now looking it up, and I would say he definitely has some of those traits/symptoms. He has never really sweated very much (nor does his paternal grandmother nor did her mother – to the point of easily overheating), low blood pressure (which I certainly had at his age, and he is in no way an anxious person), my husband and I are quite athletic from athletic families, and he has never been interested, enjoyed or tolerated a lot of exertion, I’m not so sure about the gastric side of things since he largely lives away from us. As far as temperature control, he rarely complains about temperature but has always seemed to be warmer than cool. I just read about neurocardiogenic syncope (NCS), and he does have quite a few (if not all) of those triggers which include: dehydration, stress, alcohol consumption, very warm environments, tight clothing. When exposed to any of those triggers, he will often think it’s an aura coming on.
            6. No genetic testing of any kind thus far.

            He did have an MRI on Monday which was normal. He has an echocardiogram tomorrow (Friday). I’m not sure if you’ve heard about a site called CrowdMed (it’s a site where people can post mysterious medical cases and various physicians and others weigh in to see if a diagnosis can be found), and the physician who is the administrator on the case mentioned Fabry’s disease when I mentioned in the case that our son has a paternal 26 year cousin who was diagnosed with hypertrophic cardiomyopathy as he was entering medical school. As I researched it, it seems unlikely in that the disease is not passed from father to son, but only from fathers to daughters and mothers to either son or daughter. We are going ahead with the test for more information.

            I know his appointment at the Mayo Clinic is nearing, but I see no reason to stop trying to figure this out. I know there is a phrase in medicine of “when hearing hoofbeats don’t look for zebras.” This makes me think his condition has something to do with his anticonvulsants and some latent malabsorption process that is causing a cascading effect of imbalance in his body that is leading to this.

            Again, thank you for your time and effort in this matter. It is greatly appreciated!

            1. It is indeed an interesting problem. I would pick out certain features. Allodynia is (to me) a strong indication of brain inefficient use of oxygen. Though it might make your husband have a fit, I have concluded that beriberi is the “great imitator” of disease, because it is the classic example of acquired mitochondrial dysfunction. The other cause of Mt disease is, of course, genetic. If hypoxia is the direct cause of allodynia, anything that interrupts oxidation will have the same effect. That is why thiamin deficiency is referred to as “pseudo-hypoxia”. As your husband knows, the posterior brain is peculiarly sensitive to thiamin deficiency and the resulting chaos is mediated through the autonomic/endocrine axis in the form of incomprehensible symptoms, i.e. dysautonomia. My diagnosis is that all his symptoms fit mitochondrial dysfunction, including his seizures and the auras. Beriberi (as a model) affects the sympathetic system at one stage of its progression and the parasympathetic at another stage and low blood pressure is a classic sign. Sometimes the diastolic can be zero. The cousin has a classic sign of “beriberi” with hypertrophic cardiomyopathy. My take is that this is a genetically determined mitochondrial disease that may require another factor (e.g.alcohol, sugar, infection, trauma) to express itself clinically. Hence, its intermittent expression, each with its residue of lasting effect. It MIGHT respond epigenetically to thiamin tetrahydrofurfuryl disulfide (TTFD). I suggest that you look this up on line and get my paper (it is available as Lipothiamine)
              Thiamine tetrahydrofurfuryl disulfide: a little known therapeutic agent.
              Lonsdale D.
              Med Sci Monit. 2004 Sep;10(9):RA199-203. Epub 2004 Aug 20. Review.

              1. I can’t thank you enough for your thoughts and suggestions. He is waiting for an echocardiogram just now, and I am going to spend the time researching your site. As I did a little more research, I saw that speech can be involved. He has stuttering issues that have gotten worse and worse in the last few years. We thinking get it was perhaps related to his temporal lobectomy.

                Also, what kind of specialist would deal with this? An endocrinologist? Neurologist? I will definitely have more questions regarding testing, etc. I seemed to recall reading somewhere on this thread that the Mayo Clinic does not test in such a matter to potentially pick up this problem, which we would need to be aware of before heading there. Thanks again, I’ll be in touch soon.

              2. Hi Dr. Lonsdale,
                Over the weekend, my husband was able to delve into beriberi and thiamine as related to our son’s case and really thinks you have hit the nail on the head. He has spent a lot of time trying to understand the mechanisms and processes surrounding thiamine and other agents. Clearly this is a stretch for an orthopaedic surgeon who is more than twenty years out of medical school. 😉 Now our dilemma is the lack of availability of testing and how to convince any physicians of this possibility. From what I have gathered on this thread, this diagnosis goes against the grain of Western medicine in the United States, and we worry about resources to help us confront this problem.

                I have read a lot of what is on this thread – all of which I certainly don’t understand – but it seems that a few different supplements need to be implemented in order to make ensure the proper process is completed. How might we go about determining this? And, are these supplements we are getting just eliminated by the body if there is more than is needed? Any thoughts you have would be greatly appreciated.

                My husband did order this from Amazon last night: Ecological Formulas- Lipothiamine 60 tabs the content of which is this: Lipothiamine 60 tabsA Dietary SupplementSupplement FactsServing Size: 1 tabletServings Per Container: 60Amount Per Serving:Thiamine Tetrahydrofurfuryl Disulfide (Vit. B1) 50 mgAlpha Lipoic Acid (Thioctic Acid) 7.5 mgOther Ingredients: Dicalcium Phosphate Cellulose Derivative Magnesium Stearate Silicon DioxideDirections: Take one or two tablets daily or as directed by a physician. These tablets should be swallowed intact and not be chewedLipothiamine is a scientifically designed food supplement and represents the biologically-active form of vitamin B1. He also ordered a magnesium supplement. Here is the info on that. Integrative Therapeutics – Krebs Magnesium-Potassium Complex – Support for Healthy Heart Muscle Function – 120 Tablets. Provides well-absorbed form of potassium and magnesium to support healthy heart muscle function. Krebs Magnesium-Potassium contains potassium and magnesium in the form of Krebs cycle intermediates (citrate, fumarate, malate, succinate and alpha ketoglutarate). These organic acids are responsible for energy production within every cell of the body, including the heart. Minerals in the form of Krebs cycle intermediates are better absorbed and utilized.

                From a more global point of view, my husband and I have been talking about this issue, and it seems as though this could be a watershed moment for thiamine deficiency, and we are wondering what can be done to regain testing at the very least and to raise more awareness. In addition to our nephew with hypertrophic cardiomyopathy, I have a father with Alzheimer’s, cousins with celiac, a daughter with gastrointestinal issues and depression, a nephew born with severe arthrogryposis, not to mention our son. I am just wondering if there is a thread through many of these health issues. Anyway, thank you again and again for your thoughtful efforts and input. You are way ahead of your time, which I’m sure is cold comfort to some degree.

                Kind regards,
                Julie

                1. Although the chemistry is complex, thiamin stands astride the enzyme (like a gate) by which glucose is oxidized (burned) to create energy. The job of the citric acid cycle is to produce electrons. They are then processed in a biochemical “machine” that creates adenosine triphosphate (ATP). ATP stores energy and is used to drive function. Because of genetic issues and/or poor diet, there are millions of people in America with a multitude of symptoms that are being hopelessly misdiagnosed. You don’t really need complex lab work. Simply start with 1 tablet a day, wait for paradox( temporary increased symptoms) to subside and then gradually add tablets slowly until symptoms begin to disappear. It should be accompanied by magnesium (250-300 mg) and a well rounded multivitamin. I have used Lipothiamine in hundreds of cases. It is completely non toxic and can be dosed much higher to as many as 5 or 6 tablets a day. Your husband can go to pub med and research thiamin by inserting my name in his search. There is lots of information available

                1. Last time I checked, they only did the TKA first part, not the thiamin pyrophosphate stimulation effect(TPPE). That will miss all but the most severe deficiency

                  1. Dr. Lonsdale,
                    There is a lab in New Jersey http://www.hdri-usa.com/, which offers the following tests: Enzymes (EGOT, ETKA, ESOD, EGR, EGPx, Catalase. I just read your note to Julie about the TPPE being necessary. Am I understanding that the TPPE is separate from the EKTA?

                    When I called this lab in New Jersey, the woman I spoke with had no idea what I was talking about when I asked about the TPPE. I don’t think she had any knowledge of the test, and was just reading the description to me.

                    Thank you.

                    1. ETKA stands for “erythrocyte transketolase activity”. Transketolase is an enzyme whose activity depends on thiamine and magnesium. Measuring its product provides the baseline activity of the enzyme and it has a normal range as measured on healthy people. It can be normal if thiamine deficiency is mild to moderate. The next and essential part of the test for depicting thiamine deficiency is to repeat the reaction after the addition of thiamine pyrophosphate, the active form of the vitamin. If the activity of the enzyme increases, it is reported out as the thiamine pyrophosphate effect (TPPE) meaning that the enzyme activity was below normal until it received thiamine. It is reported out as a percentage increase over the baseline result. If the enzyme was saturated with its cofactor the TPPE would be zero meaning that there was no acceleration as a result of the addition of thiamine. The percentage increase over baseline represents a gradual transition from thiamine adequacy to deficiency. A laboratory measuring only the TKA will miss the majority of thiamine deficiency patients.

                  2. Greetings from the Mayo Clinic. It’s our second trip in two weeks. I’ll try to keep info brief. If there are any typos or misreadings it is my fault. This is what I got from nurse over the phone earlier this week: Last week tests revealed pANCA and MPO antibodies (don’t really even know what that might imply or what it means other than Googling it), and microscopically poly arteritis was seen.

                    Here is summation of MD’s note: “Very unusual relative to clinical symptomology. Sweat test shows unusual pattern of asymmetric truncal anhidrosis which could be related to prior sympathetic blockade or medications but could also support an autonomic ganglionopathy. Recommendation: pursue further extensive lab evaluation, a UA for urinary sediment, rheumatology consult and an autonomic reflex screen. Other labs are unremarkable except for mildly low bioavailable testosterone and low normal total testosterone level. “

                    We are in the midst of those tests. Do any of these results rule out thiamine deficiency? Do you still think it’s a possibility? He has been on thiamine supplements for about 10 days and seems to feel a bit less pain, but that is also the time period in which he began aquatic therapy so hard to know. Let me know your thoughts…dying to know! Thanks so much.

                    1. I sincerely believe that disease is caused by a collective effect of cellular energy deficiency. The better the brain, the more energy requirement. That is why I questioned his IQ. Years ago, I had a 12 year old epileptic boy whose medicine had been discontinued suddenly and resulted in status epilepticus. I treated him with intravenous Lipothiamine, resulting in complete relief. I knew a neurosurgeon who believed that seizures were caused by inefficient oxidation and this treatment suggested that he was right. I would like to refer you to our recently published book “Thiamine Deficiency Disease, Dysautonomia and High Calorie Malnutrition”, available on Amazon books

  3. My brother became very ill after working hauling frackin sand. His muscles wasted away and his lungs became weak. He was diagnosed with beriberi. He is being treated with thiamine and b12. I wonder if biotin is the missing link.

      1. I read the reply from caveman 1who lived near a frackin site. He stated that he had to do 20 times normal amount of thiamine and biotin to be able to get out of a chair. He lived near frackin site. My brother waited in line everyday to deliver to frackin sites. One day he got out of truck and could not walk. He made it back to the truck and never worked again. Months went by and no one could figure out what was wrong. He went on oxygen and lost a lot of weight. One hospital thought he was an alcoholic because he was low in thiamine. We told the doctors he did not drink. He was transferred to a nursing home and they did not continue with the thiamine. We currently have him on thiamine at a different nursing home. He also has high folate and b12 and is anemic.

        1. I am afraid that this is a fairly common example of a complete refusal to recognize and deal with severe thiamin deficiency. My comments are as follows. He may have been slightly deficient (the easiest way to thiamin deficiency is consumption of sugar) worsened by exposure to some toxic agent from fracking. Without going into the technical issues, a major clue is the increased folate and B 12 that seems to be associated with thiamin deficiency. I would suggest that you obtain Lipothiamine from Ecological Formulas and provide him with at least 200 mg a day together with 300 mg of magnesium and a well-rounded multivitamin

    1. The normal range for whole blood thiamin is 74-222 nmol/L so your blood level is in the normal range. Unfortunately, it is meaningless because the whole blood level can be perfectly normal when there is mild to moderate thiamin deficiency.

  4. Hi Dr. Lonsdale,

    Here are some studies which show high sulfur levels in cattle caused thiamine deficiency which resulted in polioencephalomalacia.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1681016/

    https://vetmed.iastate.edu/vdpam/research/disease-topics/toxicology/sulfur-toxicity

    http://www.merckvetmanual.com/nervous-system/polioencephalomalacia/overview-of-polioencephalomalacia

    And here are some links showing high levels of sulfur dioxide are being sprayed across our skies.

    http://stopsprayingcalifornia.com/Sulfer-Dioxide.html

    https://gnosticwarrior.com/al-gore-chemtrails.html

    https://en.wikipedia.org/wiki/Stratospheric_aerosol_injection_(climate_engineering)

    https://chemtrailsinourskies.wordpress.com/bill-gates-involvement/

    Is it possible for high levels of sulfur dioxide in the air to create a thiamine deficiency in a population of people the same way it does in cattle?

    Thank you so much for your research and insights into this subject! 🙂

  5. Hi there.
    I have been sick a long time, and suspect I have a genetic thiamine transporter deficiency. I have been taking sulbutiamine for 4 days, and added in allithiamine ecoligic formulas today. I saw your patent where you gave 50mg allithiamine 2-3 times a day rectally to autistic children, and they improved a lot. The recommended dose for sulbutiamine is 400-800mg a day or more so it is multiple times more than the dose for allithiamine. This makes me wonder if allithiamine is a lot more bio available than sulbutiamine. Allithiamine is lower molar mass than sulbutiamine so may cross cell membranes easier. Logp of allithiamine is 0.9, logp for sulbutiamine is 2.7. Optimal logp for crossing of membranes is somewhere between 0-3, but maybe the lower logp for allithiamine is better because it will be more water soluble compared to sulbutiamine which is not water soluble at all. So Dr Lonsdale out of those two forms of thiamine, which one, in your opinions is the most bioavailable? And what about some of the other lipid soluble forms of thiamine mentioned in the literature.

    Regards,
    Sam.

    1. In my view, the best thiamin derivative is Lipothiamin because it is enteric coated and passes through the acid environment of the stomach to the jejunum where it is absorbed. This is one of the many open thiazolium ring disulfide derivatives. The disulfide is reduced at the cell membrane, the prosthetic group is removed and the ring closes inside the cell. The reason that it is called fat soluble thiamin is solely because of this capacity to pass the active molecule through the lipid barrier of the cell membrane. It does not require a thiamin transporter. Lipothiamin comes in 50 mg tablets.

      1. Hi Dr Lonsdale
        I am taking lipothiamine from iherb since yesterday. Sometimes I crush the tab in my teeth, and let the powder dissolve under my tongue to take it sublingually. This feels a lot stronger than just swallowing it.
        There is studies showing disulfide bonds do not break in stomach acid so the enteric coating seems unnecessary. The best of the best form may be the thiamine in garlic- thiamine allyl disulfide. I am getting some from a chemical manufacturer, and will try it. TTFD likely has side effects as it is not a naturally occurring molecule. This is not made clear on a lot of websites. I took sulbutiamine at 5 g a day for 4 days, and got a lot sicker. I suspect it inhibits thiamine enzymes or transporters. It is dangerous, and ineffective. The studies say it raises organ thiamine more than thiamine HCL but they must be fabricated like the ones on benfotiamine saying it raises organ levels 25 times higher than thiamine HCL. And there is a lot of nootropic websites promoting sulbutiamine. Someone is spreading deliberate misinformation. I suspect psychiatrists because so many diseases, and mental illness is caused by thiamine deficiency which is easily treated with TTFD. The type of thiamine in grains before it is refined must be a lipid soluble or some other bio available form not a salt. And the type thay add back in to fortify them must be a salt which is why thiamine deficiency is still common in the population.

  6. I found this PubMed article titled “Widespread episodic thiamine deficiency in Northern Hemisphere wildlife.”. from December 13th, 2016. They say, “the results point towards insufficient amounts of thiamine in the food.”
    https://www.ncbi.nlm.nih.gov/pubmed/27958327

    Could a thiamine deficiency be what is what is causing the massive animal die offs to occur in our fish and bird populations?

    If these animals are not eating sugar like most Americans , could it be pesticides or other xenoestrogens from pollution causing their depleted thiamine deficiency?

    Another theory that comes to mind is chemtrails which have shown to be full of poisonous sulfur compounds. Sulfur supplements have triggered thiamine deficiency in grazing herds. Could this be a possible cause also in our air we breathe?

    I’m just an independent researcher with POTS syndrome at age 34. Thiamine has helped in so many areas. Thanks for your time. God bless .

    1. Thank you for this interesting article. I was not aware of studies in this area. I suppose that thiamin deficiency could be having a major effect. The cause may not be so much in the food supply since that really hasn’t changed for wild animals. However, it seems that many different forms of stress, including trauma, infection and toxins may be precipitating cellular thiamin deficiency and it may be that toxins developed from human activities might be primary in this respect.

  7. Hi Dr. Lonsdale,

    I came across this blog about estrogen dominance in our bodies caused by thiamine deficiency and was wondering what your opinion is about it.

    https://raypeatforum.com/community/threads/vitamins-b1-b2-are-required-for-estrogen-inactivation-by-liver.6868/

    A few years ago I learned about xenoestrogens in the environment caused by pesticides and plastics in our food chain. I did some supplementation with progesterone oil from Dr. Peter Eckhart and saw really good results with improvements in my sleep and anxiety and digestion .

    I was wondering what your opinion is about chemicals in the environment triggering a thiamine deficiency. The study says:

    “…Our results clearly demonstrate that, of the vitamins tested, riboflavin and thiamine are essential in
    the metabolism of esradiol by liver slices. The inactivation of esradiol is dependent upon the concentration of these vitamins in the liver.”

    http://www.jbc.org/content/154/1/79.full.pdf

    Thank you for your time and help.

    1. An interesting question! I spent several hours trying to find an answer by library research. I found a manuscript in which the abstract states “in uterine endometrium, the level of estradiol is controlled by oxidative 17beta-hydroxysteroid dehydrogenase activity which converts the bioactive hormone to the less active compound estrone” I understand that this is highly technical but what interested me was that the enzyme is classified as a dehydrogenase. Many dehydrogenase enzymes require thiamin and riboflavin, but I could not find whether this one also requires these vitamins. If it does, it would provide an answer to your question. The study was done in primates and is likely to apply to human physiology.

  8. Dr. Lonsdale,

    My mother is 93 years old, and for the last 3 years, since the divorce of my brother, she’s been depressed and having lapses of memory and digestive problems. I was wondering if thiamine could help her. I remember that you said that magnesium, a good vitamin complex and thiamine would do good for lots of people.

  9. In doing my research after being severely effected by Lupron, I have read many studies and articles , especially those posted on Hormones Matter. Has anyone thought of coordinating a symposium for the main authors? I believe getting these people together could potentially lead to huge idea exchange with extraordinary outcomes. I would be willing to assist.

    Also in my research, I was looking into the effects of the amino acid substitutions made in the Lupron, mainly how D-leucine was substituted for glycine. This seemed to be a potential link between all of the diseases and syndromes and thiamine deficiency as noted in the Hormones Matter articles.

    I just found a paper, published by Stephanie Seneff and Anthony Samsel in the Journal of Biological Physics and Chemistry, called Glyphosate pathways to modern disease: Amino acid analogue of glycine in diverse protein, Feb/March 2016. They pull together information from their research and many studies that show the adverse effects of simple glycine being substituted with larger synthetic analogues. I would encourage everyone to read this article, possibly get a summary published here, and start discussions that link all our research.

    1. We would love to do a conference. It’s been longstanding goal of mine to put such an event together. The issue is funding. Regarding Stephanie Seneff’s work – have been following her for years. Have cited her work in a number of articles and in our new book.

  10. Westlake Labs and TMI no longer offers the transletolase test. Is there anyone that knows where the test
    can be purchased?

  11. Dear Dr Lonsdale and Dr Chandler,
    I am a women from Germany (39) and stumbled upon the thimaine related stuff accidentally.
    I have normal lactate/pyruvate levels and normal serum b1 levels, thats why none of my doctors ever thought of mitochondrial issues as a cause for my symptoms!
    But: 2 years ago I started to have severe leg problems and I never recovered from that: permanent tingling, twitching, cramping and leg weakness. The same day this started I developped gastroparesis. Then, over time, my pregnenolone levels dropped to the point only very aged people have (and I Learned pregnenolone is made in the mitochondria). I have also high nitric oxid levels and don’t know why.

    I can hardly walk because of my legs/exhaustion and I get strange sensations like feeling “poisoned and inflammed” all over and my stress response kicks in (insomnia) without even having had any stress (just trying to walk causes this cascade of symptoms). That’s how I got from being sporty/active to a women who can barely walk within 2 years.

    My diet is very restricted now due to many intolerances, but it wasn’t when I developped the condition (I ate very healthy 2 years ago). I can now only eat mainly white rice, some meat and a few vegetables.

    I had a look into your new book on Amazon and will buy it, because I saw you explain the thiamin/mitochondria link in great detail. But I also saw lactic acidosis is often mentioned which I clearly don’t have (at least according to my levels). Are there any experiences if my problems could be linked to thiamine deficiency? I have no lab available which tests for the transketolase. Any suggestions? My condition could easily be named “chronic fatigue syndrome”, but I feel there must be some underlying mechanism.

    Thank you for reading!

    1. This is an interesting post. The fact that you acquired the symptoms two years ago strongly suggests that this is not genetic alone, but related to an unknown stress factor or nutrition. It is interesting that your diet of white rice is exactly what produced beriberi for thousands of years in China and Japan. On the other hand a normal pyruvate and lactate tends to mitigate against thiamin deficiency. A normal blood thiamin does not preclude deficiency. It is possible that it might be magnesium deficiency, since magnesium and thiamin work together. There can be no harm in taking Lipothamine and magnesium on a clinical trial, but my suggestion is that you get a series of intravenous water-soluble vitamins.

      1. Thank you for replying, Dr. Lonsdale!
        The stress factor that preceded the sudden onset was ongoing insomnia along with a medication I was put on for sleep (quetiapine). The medication didn’t help but produced permanent cramping/twitching which resolved about 80% when I stopped it (some twitching remained).
        Some months later I slowly rode my bike and noticed a weird sensation in my legs. I went off my bike and my legs collapsed. That was the point of no return, the weakness/cramping/twitching and muscle pain (like too much sport, but only after a few steps) never went away. So the sport has triggert a condition that may have been there latently before (the reaction to the low dose medication also wasn’t normal I guess). Thank you for suggesting Lipothiamine & magnesium along with watersoluble vitamins, I will try that!

    1. “My results (of what?)are below the range”. Also, I don’t know what you mean by a “threshold” or what test was used. A thiamin blood level can be quite normal in the presence of deficiency. If the blood level is abnormally low, it is a guarantee of deficiency. Unfortunately, Ginger does not tell is anything about her symptoms.

      1. I had a vitamin B1 blood test done. The result was 63, and the range is 70-180. I can’t find anything online that tells me if this classifies as beri beri or just a deficiency, and that was my question. I do have some symptoms of dry beri beri. I have nystagmus and dizziness, and I’m trying to figure out how much this deficiency may be contributing to that.

        1. Ginger responds that she has “symptoms of dry beriberi” and these include nystagmus and dizziness. The fact that she has a low thiamin blood level indicates that she does have severe deficiency.She goes on to ask the question whether this “classifies as beriberi or just deficiency”. Beriberi IS the classical disease that occurs as a result of thiamin deficiency and nystagmus and dizziness are two symptoms that occur in this disease. The point that I have tried repeatedly to make on this website is that there are a huge number of symptoms from beriberi, none of which is pathognomonic (a technical word meaning that a given symptom is not exclusive to beriberi. It can occur for reasons other than beriberi). Obviously, thiamin deficiency is the CAUSE of Ginger’s symptoms.Readers should try to understand that thiamin stands in the body’s gateway to the production of energy in all our cells throughout the body. However, the brain and heart are the most metabolically active tissues and therefore require a huge amount of the available energy. Theoretically, thiamin deficiency can affect anything in the body because it is causing energy deficiency but the brain and heart are most likely to be in trouble because of their disproportionate energy requirement. I have asked Ginger to give her medical history because it needs to be emphasized that this disease does occur in America and is actually widespread in spite of overall medical skepticism.

  12. Dear Dr Lonsdale

    I have an interesting proposal to discuss with you regarding the appearance of sudden right heart failure in patients and rapid reversal by administration of thiamine. I want to discuss the nuances of this further. Can you please share your email id for me to communicate.

    Regards
    Parvaiz Koul
    Professor of Medicine
    SKIMS
    Srinagar, India

    1. As this physician knows, right-sided heart failure is typical of beriberi, the thiamin deficiency disease that has ravaged Eastern countries for centuries. A typical x-ray of a beriberi heart shows general enlargement that is more accentuated on the right side. Because beriberi is not supposed to occur in America, when this kind of heart enlargement occurs, it is usually referred to as “cardiomyopathy, probably of viral origin”. As a physician myself, I have seen many different aspects of beriberi when I was in practice. It is common because of the huge sugar intake in the American diet.

  13. My husband has a right foot drop issue for a while, now his meningioma on the left side of the brain is removed a few days ago, his foot drop seems worse. He has an enlarged heart, pulse rate above 100, muscle shrinkage, foot and calf numbness. His tonque shifted to the left after the surgery and speech became a bit blurred.
    He has been taking Keppra for 7 years for seizure control.
    Is this a clear case for B1 deficiency? How much and how long should we supplement B1? I n what form? Allithiamine?

  14. I have a 19 year old son with Down syndrome and this population has obstructive sleep apnea. Also the APP is overexpressed in the brain. This causes copper dysregulation in the brain – and it also affects manganese which has a synergistic relation to thiamine. Also RCAN1 is overexpressed in this population and in Alzheimers Disease and it has recently been discovered that this gene is also overexpressed in diabetes II. There has been a study on the effects of RCAN1 on peripheral tissues in DS and the pancreas and spleen function is much lower, especially the pancreas. We are experimenting with lipothiamine and Benfotiamine – trying to decide which is better/more effective. I just started my son on pancreas glandular. Something is helping. He is also on whole food vitamin B and magnesium – we will be monitoring this and changing supplements as needed. Back to RCAN1…. this gene is located on the 21st chromosome. It is very important but overexpression inhibits calcineurin which is needed and studies state the that the overexpression inhibits growth of the pancreas. Just a little history on that. The health of the gut also figures in and needs to be addressed. Obstructive sleep apnea and the brain stem – I would really like to know more about that and how Dr. Lonsdale would advise testing – what to look for. I have seen comments – he has delved into this subject and feels that it can be treated. There is no doubt in my mind that there are correlations between alcoholism and Down syndrome although mechanisms differ. The cerebellum which is thiamine dependent stops growing within hours after birth in a DS mouse model. Obviously diet is paramount. I know that Dr. Lonsdale did look into TTFD and Downs syndrome years ago and there were no clear correlation of benefit. Still, thiamine deficiency is a huge problem in this population without doubt. David Watts from Trace Minerals Inc (lab that does hair mineral analysis testing) has stated that people with Down syndrome tend to be low in manganese. I concur. I would be happy to hear from Dr. Lonsdale if that is a possibility. Looking out for the benefit of all persons with Down syndrome.

    1. Lejeunesuggested that there was deranged oxidative metabolism in Down syndrome (Lejeune, 20 years later. Hum Genet Suppl 1981; 2:91-101). I have treated sleep apnea with TTFD. The manuscript in Orthomolecular Medicine concerning the use of TTFD in Down syndrome did suggest a slight benefit. I would certainly agree with its use in your son.

  15. Hi Derrick, Great article

    I tested low on my whole blood thiamine test and also have symptoms of low b1. 73 (78-185)

    I was having really fast heart rate in the 100’s before b1 supplementation and when i took benfotiamine with thiamine hcl and thiamine cocarboxylase my heart rate slowed down considerably.

    But my heart rate is too slow now. At rest it is in the 40’s and sometimes dips into the 30’s. I read that thiamine supplementation can cause slow heart rate as a side effect.

    Now i dont know what i should do. Have you ever seen this side effect from thiamine supplementation?

    And can you give me any clues on why this happens and how to address this issue that I can discuss with my doctor. He’s clueless as to how to proceed.

    Any help?

    Thank you.

    1. Thiamine does not work alone. It is a member of the B complex. I would suggest that you reduce the thiamine to100 mg a day and add B complex, plus a significant amount of magnesium. Vitamins, like everything else in the world work on the basis of Yin and Yang, not too little and not too much. You have to strike a balance and you should add in a well-rounded multivitamin

  16. Hi, I was wondering if you know of a list of labs in the US that does the more advanced form of thiamine testing. I can’t seem to find a lab in my area that does them. Also, what form of thiamine do you recommend in supplement form? I just started taking 500 mg 2x daily of thiamine hydrochloride and it is helping me significantly with so many symptoms. Thanks so much for your help and research. 🙂

    1. I wish! I do not know of any laboratory that does the full test. To do only the transketolase without the thiamine pyrophosphate effect is misleading and will miss a large number of true thiamine deficiencies. Taking 1000 mg of thiamine is a colossal dose and is okay until you reconstitute the normal chemistry. I would add a significant amount of B complex and eventually you will need to lower the dose of thiamine so as you strike a balance between thiamine and the rest of the B complex. You should probably do this through a nutritionist who knows the chemistry

  17. Greetings from the snowy Canadian Rockies, Dr Lonsdale.

    Both my later wife & I were poisoned by the fumes from flaring & Incineration and some venting of Fracked Oil & Gas wells upwind of our house. Being I scientific type, I started analysis of the little data I was given initially, producing first about a 200 page treatise on Phosgene (chemical name: Carbonyl Chloride, CO Cl2) ), which was the most “successful” Chemical Warfare gas used in WW1 ( 90,000 killed in France & ~1million in Russia and some in Morocco). It smells of “newly mown grass”, which I smelled with 3″ of snow on the ground and at minus 20C, on the 18th Dec 2011, when no-one was mowing anything! Odour threshold is at 1.5 to 2.5 ppm, “immediately hazardous to life” at 4 ppm so by the time you smell it, it’s just about too late.

    We were driving past well site on the public road at 50 mph. I managed to stop breathing in just 2 to 3 breaths. My wife must have breathed for about 15 to 20 breaths, before I shouted at her to stop breathing and I had driven far enough past the well site to open the car windows fully in clean air. I was badly affected, as my legs collapsed when I got out of the car at home. My wife could not walk nor talk for about 1.5 to 2 hrs. Her R lung collapsed.

    There is no treatment for Phosgene exposure I found out later. We did coffee enemas, but they did not reduce the terrible ling pain. I later found out that Choro-genic acid (found in coffees) given BEFORE Phosgene exposure reduces some of the damage to the lung Alveoli. My wife’s R lung collapsed fully. I had a bloody weeping wound from the inside on my fore-head 5 days after and impressive red skin lesions 5 to 6 weeks later in my chest. You could see where the ribs & Sternum stopped the passage of Toxins through the chest.

    Much later in Oct 2012 to Feb 2013, I found out that the Frack Biocides, used to sterlise the Frack Fluid were Bromine based Nitriles: Di-Brom-Aceto Nitrile (DNAN) and Di-Bromo- Nitrilo-Propion-Amide (DBNPA) and Bromine based “Bronopol” plus Di Decyl- Di Methyl Ammonium Chloride (DDAC) .

    The Bromine free radicals attack anything containing Sulphur in the body: Methionine, S-Adenosyl Methionine (SAMe), Cysteine, Glutathione, Taurine, Homo-Taurine and the whole family of Sulphur containing peptides and proteins.

    Many of the flares and incinerators were shut in, so I was able to return to our home after about 18 months, but My wife of nearly 35 years died on 27 Feb 2013, so I am now alone.

    Much later, I realised that Thiamine and Biotin also contain Sulphur, along with insulin & other compounds. Recently on 21st June 2016, there was another Flaring incident, which came in from about 3 Km away into my kitchen. My exposure was probably 15 minutes, the time it took me to recover from falling into a chair and then manage to get up, close all the doors & windows and turn on 6 high performance air filters with activated carbon, in the house.

    My need for Thiamine and Biotin increased by about 20 times. this was immediate, within about 30 minutes. About 5 days later, my need for Niacin increased by more than 20 times. I found a PhD thesis from India, showing that Niacin is oxidised by Hypo-Bromous Acid, a breakdown metabolite of the compound they were testing called Brom-amine, very similar to the Frack Bromine Biocides.

    I mention these compounds and mechanisms in detail , as I believe this explains the many strange complaints suffered by people world-wide from Fracking emissions. In effect everybody has concentrated on the hydrocarbons and other ordinary solvents and so on, used also in Fracking or the Benzenes, Toluenes and Xylenes etc found in petroleum.

    The body has large stores of Sulphur containing proteins, so poisoning by deficiency of such compounds is slow. No-one seems to have recognised the other sulphur containing vitamins etc, which are stored in the body in a few milligrams or hundreds of microgramme levels. So not merely deficiency, but complete absence of say Thiamine or Biotin (that is Avitaminosis B1 or B7 ) can occur in just days or a few weeks from breathing these Frack emissions.

    A similar situation occurs with Vitamin B12, as the Cyanide containing Frack Biocide DBAN & DBNPA will convert “active B12 in the body (Adenosyl-Cobalamin and Methyl Cobalamin ) to Cyano-Cobalamin, which is inactive in the body. But your Dr will say you have ton of B12, becasue the Serum B12 test picks up the “Cobalt Ring” structure and any analogues (Vit B12 “look-alikes”) which are recognised by the Serum B12 test, but have no useful activity in the human body.

    Nitrous oxide, produced by incomplete combustion of the liquid Nitrogen Containing Frack-Fluid oxidises Vit B12 to inactive oxidised forms. The Nitrogen is used to make the Frack Fluid more “slippery” or “slick” in American oil industry parlance.

    My wife died because of sheer money grubbing greed of the Oil Companies, plus stupidity of Emergency Doctors who did not know that any kind of Irritation or Inflammation causes the so-called Cancer Markers to go high. They simply would not listen that she was not in pain and did not have Cancer. So they gave her Morphine for a Cancer she did not have! Cancer markers can go high from things even like the shock to muscles from a Car Accident, or high pollution from oil wells, for example,

    Dr Londsdale, you appear to know a thing or three about Beri-Beri, Biotin deficiency and Pellagra and detoxification-nutrition which also were factors in my wife’s Death. Would there be any chance of you acting in an “Expert witness” capacity in this matter? You seem not to have forgotten the great discoveries of years & decades gone by, when “vitamins” were regarded in awe, not as “Very Dangerous” as many Drs. think today..

    Although I came from Canada, my Great Grandfather Built the base of the Statue of Liberty and the installations on the area around & Staten is in NY Harbour.

    His father, or was it grandfather, wrote ” Hail Columbia” and designed the Great Seal of the State of New Jersey.

    His Father was one of the Signatories of the “Declaration of Independence”, for the State of New Jersey. Portraits of the Signators were painted a few months later, and this stayed in my Family until about the bi-centenary, when my family gave his original Portrait to the People and Congress of the US of A. It is in the American Museum in Bath in the West coast of England, the only portrait of a Signator of the US Declaration of Independence in England to my knowledge.

    Best Wishes.
    From 1 CAVEMAN

  18. I have been dealing with chronic fatigue syndrome for around 4 years now which presents me with chronic issues like chronic diarrhea, malabsorption, a host of nueroimmune problems, and food sensitivities that limit my food intake to just four foods( rice, bok choy, mustard greens, and cabbage). The fatigue is really debilatating and can last for months to where im completely bedbound.

    Recently, Ive had ongoing pain, soreness, cramps and extreme weakness in my calfs bilaterally. Usually when i get muscle weakness, it tends to go away within a week to a month of continual rest, but currenty its been 3 months and its only getting worse.

    Ive been seen by a neurologist and he ordered some blood test :

    Abnormal blood test:
    vit d 25 hidroxy- 4 ng/ ml (30-100 ng/ ml)
    cpk- 1260 u/l ( 39-308) u/l
    aldolase- 22.7u /l (< OR =8.1 u/l)
    mma- 152nmol (87-318nmol/L)
    b12 – 242 pg/ ml (193-982pg/ml)
    AST- 62 U/L (0-37 U/L)
    Homocysteine- 12.5 umol/L ( 3.2-10.7umol/L)

    EMG and NCS showed moderate to severe damge.

    Do you suppose this could be a multi factorial deficiencies that could be causing my symptoms? My neuro thinks its some kind of mitochondrial myopathy.

    I have yet to test for thiamine deficiency, but am highly motivated to do so. From your extensive experience could thiamine deficiency show up like this?

    1. The clues are vitamin D and elevated homocysteine. You need very large doses of vitamin D3 and injections of B12 and oral folate. Vitamin B12 level can be normal in the presence of deficiency. Since chronic fatigue syndrome is due to defective mitochondria, it wouldn’t do any harm to add big doses of thiamine and magnesium as well

      1. I could not find a lab that does the transketolase activity. I stumbled upon an article written by a lab about vitamin b1. I have a very high suspicion that what has caused my current leg symptoms and tachycardia is thiamin deficiency causing dry beriberi. Here is a link to the article :

        http://www.wardelab.com/19-1.html

        Here is an excerpt

        Severe Deficiency
        Severe thiamine deficiency is called beriberi. Three main types are recognized: “dry” or neuritic, “wet” or edematous, and “infantile” or acute.
        Dry Beriberi
        Dry beriberi is a disease of the peripheral nervous system involving bilateral impairment of sensory, motor, and reflex functions. The neuropathy begins in the feet and legs and then extends up the body. Early signs of dry beriberi often include sensations of pins and needles and numbness in the feet. The legs, especially the calves, feel heavy and weak so that walking becomes uncomfortable. As the disease progresses, there is a marked wasting of the leg muscles and even slight pressure applied to the calves elicits severe pain. The characteristic foot and wrist drop develop and there may be complete flaccid paralysis of the lower, and occasionally upper, extremities (1).
        Wet Beriberi
        In wet beriberi, thiamine deficiency affects the cardiovascular system by causing arteriolar dilation throughout the circulatory system and by weakening the heart muscle. Physical signs of wet beriberi are indicative of high output cardiac failure; they include tachycardia, rapid circulation time, elevated peripheral venous pressure, and widespread edema.

        Im going to get my whole blood tested for thiamin pyrophosphate , since my lab does not offer transketolase testing.

        I plan to take sublingual conenzymated active b1as thiamine cocarboxylase, 25mg once a day. Would this be enough to heal my dry beriberi? My calf muscles are atrophied, my feet are completely numb, and am confined to a wheelchair due to these recent symptoms. In addition I am also experiencing pretty bad short term memory loss, increase in anxiety, heart palpitations, and bounding/increased heart rate.

        I read that you mentioned sugar consumption making thiamine deficiency worse. I consume extremely large amounts of polished white rice on a daily basis due to my food sensitivities. Would this affect my thiamine status?

        Thank you for any input you can provide. I really appreciate it.

        Al

  19. Hi, I have been having a lot of the same symptoms that some people on here have mentioned. Major fatigue, trouble sleeping, brain fog, memory issues, depression, anxiety, loss of appetite, and probably other symptoms that I can not think of at the moment. I was just tested for all of the B vitamins. My B1 came back “normal”. It is 96 in a range of 70-180. The test was performed at ARUP Laboratories in Salt Lake City, Utah. It says that the test they did measures the concentration of thiamine diphosphate or TDP. It says approximately 90 percent of vitamin B1present in whole blood is TDP. Thiamine and thiamine monophosphate, which comprise the remaining 10 percent, are not measured.

    My question is did this lab do the correct B1 test on my blood? I don’t see anything about them doing a TKA test. I’m questioning whether or not I should have my blood retested through a different lab or does this sound like the proper testing. I am desperate for answers as to why I feel so bad all the time. I feel like I am not the person I was once. I hardly have any energy, can’t seem to think clearly anymore, never feel like doing anything or going anywhere. I just want to feel normal again. Please help. Thanks.

    1. Unfortunately the blood thiamine can be perfectly normal when there is thiamin deficiency. The only test is transketolase activity (TKA) together with the thiamine pyrophosphate effect (TPPE). In fact, the TKA is usually normal when the TPPE is grossly abnormal. The reason for this is that it tests the biologic activity of thiamine inside the cell where it functions. The blood thiamine is extracellular. It is the same with magnesium that works with thiamin. You cannot tell magnesium deficiency by measuring the blood level. Please read the rest of the posts in this section.

  20. Could a B-1 deficiency in a 69 year old woman cause sudden onset confusion with loss of memory of the confused event? My mother has been dealing with the following symptoms over the last 6-8 months: hot flashes which make her “need water right away!”, light headedness, nausea, fatigue, trouble focusing. In June she had a severe episode where we had to have her rushed to the hospital due to being severely confused. She was behaving like a person with full Alzheimer’s/dementia…she didn’t talk right, didn’t know who anyone was, where she was, was combative, stripped her clothes. Hospital ran blood, said she had low sodium, gave her an IV & over a day she gradually came back to us. She has no memory of the event, she resumed regular daily life, driving, going to work 40-50hours a week, back to her normal, regular self. Then the symptoms started again, blood was routinely checked, came back normal. Today she had another episode. Not as severe, but she left work for a dr appt, then arrived home not knowing why she left work. She was panicky, feeling like she had to be somewhere but didn’t know where to go. We gave her food (she only eats salads at work & very light breakfast), then back to hospital, did blood work, sodium levels fine this time. We’ve had cat scans done, MRIs…dr’s have no idea what’s wrong with her. I should mention she had a gastric bypass 10 years ago. Could we be dealing with a B1 deficiency? We’re in Maine, is there a place here that does the test?

    1. This is typical of recurrent mitochondrial dysfunction. Mitochondria are the “engines” of all our cells and they are highly susceptible to thiamin deficiency. I would suggest that since you cannot get the transketolase test done that she gets repeated injections of vitamin B complex with 100 mg of thiamin and the corresponding doses of B6 and B12, that you can get through your own doctor. She should also stop taking all forms of sugar and alcohol (if any). That includes cakes, cookies, candy, desserts and carbonated beverages. It is sugar that induces thiamin deficiency.

    1. I don’t know the circumstances. Record the symptoms for which the thiamin is being taken. I suspect that there is an imbalance. Vitamins all work together as a team and you might resolve the situation by adding a multivitamin and some B complex.

  21. Hi Doctor, I had the TKA King James B1 test yrs ago. It did show I have a problem. Was taking B1 (painful) which did help. Stopped the shots last yr, going downhill. What would be the best oral B1..cream didn’t work. Can B1 shots be don’t subQ or has bpro be in muscle? Thanks so much for he help…..dealing w MS.

  22. I am afraid that this gets more confusing. Transketolase activity (TKA) represents the baseline activity of the enzyme that is being tested. With moderate thiamine deficiency this part of the test can be completely normal. It only becomes abnormal because of either genetic influence or because of prolonged and severe deficiency. In the second part of the test the activity of the enzyme is repeated after thiamine pyrophosphate is added to the reaction. Known as the thiamine pyrophosphate effect (TPPE), if the activity of the enzyme (TKA)is increased over baseline activity it is reported as “percentage increase or acceleration over baseline activity”. What this means is that if the original baseline activity is accelerated (even though baseline TKA is in the normal range) because of the addition of thiamine pyrophosphate, it indicates that the enzyme was not fully saturated with thiamine, thus indicating thiamine deficiency. Although I have read in the medical literature that TKA is the only worthwhile test, and that TPPE is nonspecific I totally disagree. My own hard-won experience over many years has shown that the TPPE does indicate thiamine deficiency and I have seen people improve by thiamine supplementation. When this happens, the TPPE will decrease and often will fall to zero indicating that the enzyme is fully saturated with thiamine.

    1. I don’t think there is a way to test this anymore. How would you supplement if you had this problem? What protocol would you use on yourself? B-complex? Thiamine shots and what type? Thiamine IVs? Allithiamine? Benfotiamine? Use ALL of the above? Does one start low and work up if they are already sick? How does one get thiamine into the cells? Would you be willing to contact me?
      Thank you,
      Cathy

  23. The questions and comments keep piling up from desperate people. Here are answers to the majority of questions:
    1. Red blood cell transketolase
    Transketolase is an enzyme whose activity is essential to energy metabolism and it depends on the presence of thiamine and magnesium. The first part of the test is measuring its activity and this is referred to as transketolase activity (TKA). This baseline activity can still be normal when there is thiamine or magnesium deficiency. When the test is done it can be adapted to either thiamine or magnesium so it can be used to define deficiency of either. It is used however, exclusively for measuring thiamine deficiency. If this baseline activity is low, it indicates either a very severe deficiency or a genetically determined reason for the low activity.
    The second part of the test is adding thiamine to the reaction and measuring the activity of the enzyme again. If the activity increases, it demonstrates that the enzyme needed the thiamine in order to reach its maximum activity and demonstrates clearly that the enzyme was not saturated with the needed cofactor. This is referred to as the thiamine pyrophosphate effect (TPPE). From analysis of this test on people considered to be healthy the allowable acceleration is from 0 to 18% increase over baseline. However, the absolutely normal test would be zero acceleration because it means that the enzyme is fully saturated. As the TPPE increases it represents a gradually increasing severity in deficiency. The higher the TPPE the greater the deficiency.
    2. Can you take thiamine without this test?
    Yes you can, particularly if you have been diagnosed with a form of dysautonomia known as postural orthostatic tachycardia syndrome (POTS).We have found that this disease, occurring after administration of Gardasil, is masking (in those cases in which the transketolase test indicated thiamine deficiency)as the thiamine deficiency disease known as beriberi. To use thiamine supplementation is safe but IT IS STILL GUESSWORK without proof!

    1. Yes. I will send it to you. I am sorry I did not get an email reply from you and just now saw this. Please, when you read the description, let me know if it’s the right test. I am very sick. What concerns me is they do not report the results in percentages but in a range. Really hoping it is the right test.

    2. Dr. Lonsdale; I bought two of your books and have been all over the internet looking for a protocol for taking thiamine and which form to use. Can you please explain how you would use thiamine if you needed it? My docotr is willing to do Myer’s IVs and hers has about 150mgs of thiamine but only once a week. I bought the Allithiamine but am not sure how to use it. What about the shots? How much in a shot would you use, how often, in what form? Is it safe in shots? My docotr offered shots also. Would you combine IVs, shots and Allithiamine? Which is best for vision problems? Hope I am not overlwhelming you. I have posted the test description below. Thank you, Cathy

    3. Hello Dr. Lonsdale: I have submitted the description of the test for the lab I found and then, below that, what they require. Does this sound like the right test?

      1. Hi Cathy,

        I’d like to connect here or via email to see what kind of test you are referring to. I have found a few and would like to compare notes.

        Carissa

  24. I have been trying for a few days to find a lab that tests RBC transketolase and I think I found one. Trace Minerals Int’l Laboratory in Boulder, CO. They said they test it and when I questioned further if it was the RBC transketolase and not whole blood thiamine they sent a description of the test which looked correct but is very technical and I’m not sure. Can I forward their email to you Dr. Lonsdale so you can confirm if this is the correct test? I am very sick and need this test as do many others. Thank you.

      1. Here is what I got from that lab:

        Transketolase connects the pentose pathway to glycolosis, feeding excess sugar phosphates into the main carbohydrate metabolic pathways. Its presence is necessary for the production of NADPH, especially in tissues actively engage in biosyntheses, such as fatty acid synthesis by the liver and mammary glands, and for steroid synthesis by the liver and adrenal glands. Thiamine diphosphate is an essential cofactor, along with calcium. Transketolase is abundantly expressed in the mammalian cornea by stromal kerotocytes and epithelial cells and is reputed to be one of the corneal crystallins.
        Transketolase activity is decreased in deficiency of thiamine, which in general is due to malnutrition. Two diseases are associated with thiamine deficiency: Beriberi and Wernicke-Korsacoff syndrome. While no mutations could be demonstrated, thee is an indication that thiamine deficiency leads to Werncike-Korsakoff syndrome only in those whose transketolase has a reduced affinity for thiamine. In this way, the activity of transketolase is greatly hindered and as a consequence, the entire pentose phosphate pathway is inhibited.
        The enzyme assay is useful as a diagnostic tool in heart disease and a variety of nutritional disorders. Erythrocyte transketolase activity (ETK) us reduced in deficiency of thiamine (vitamin B1), may be used in the diagnosis of Wernicke’s encephalopathy and other B1-deficiency syndromes if the diagnosis is in doubt.
        Furthermore basal ETK is a more accurate biochemical marker of infantile beriberi than the activation coefficient of the disease. Raised plasma troponin T may be additional useful indicator of infantile beriberi in infants at risk and in the absense of other evident causes.
        As method we use photometry.

      2. More information:
        The test is $25
        2.7ml EDTA blood
        not frozen but cooled in a cold box (40 degrees)

        Is the description and the sample correct for RBC transketolase?

      3. More info that I received today:

        reference range 42.0-69.0 U/L
        60.0-85.0 U/L
        I don’t know why they have 2 refence ranges??? And isn’t this supposed to be reported in percentages?

  25. It’s me, Cathy, again.
    Can one treat themselves for thiamine deficiency without “proof” except based on symptoms? Can you overdose on thiamine? Is it good to do Allithiamine, benfotiamine, and regular thiamine all at once? Plus IVs two times a week? How much thiamine in the bag? With the other Myers stuff too? I have to do something.

  26. Can someone please help me? I am 62 years old and periodically, over the years, I have gotten sick and after taking supplements somehow come out of it. Now that I am older it is much more difficult and I believe I have a problem with B vitamins. In 2009 I had some weird symptoms that started out as numbness and tingling in my lips and fingers, intermittently, and then in my toes and feet. Then, my legs gave out once while walking and I ended up in wheelchair, vision problems, ears ringing, sensitive blood sugar where I had to wake up and eat at night (all progressed over months) severe anxiety and depression. We did a lot of therapies just to try something: Myers IVs, taking lots of supplements (including 4 B complex per day) lots of magnesium, thyroid meds, neurofeedback B12/folate shots and I came out of it but never knew what worked. Within a few months, feeling better, I stopped everything and resumed sugar. Then, slowly, in 2012 I started having problems walking, very slightly and it has progressed to I am in a wheelchair again, vision problems, severe anxiety, depression, now my ears are ringing, weakness, insomnia. I feel tortured. I never thought this would happen again. After much research I think I have thiamine deficiency. Maybe the IVs/supps helped reverse it but it never really was completely taken care of before I went off of supps and started with the darn sugar again. I am so desperate and don’t want to live like this. Does this sound like low thiamine to anyone else? In reading the older posts it seems no lab does the correct test. Has this changed? I did do some Ivs again but only 50mgs of thiamine once or twice a week. Maybe this wasn’t enough? I feel I am slipping sway. I don’t know what to do. I would happily pay for a consult with Dr. Lonsdale on what I should do. Please help me. Please.

    1. Cathy,
      I have had many of your same symptoms – though never to the extreme of being in a wheelchair. I pressed my doctor to order certain tests because I was certain something more was going on than anxiety, depression, etc. All of the regular annual exam lab work was performed. My doctor even ordered a brain MRI because many of my symptoms had the same “common denominator” – brain function, neurology, etc. (I will note that the brain MRI was THE WORST experience I have ever had. I will never, ever have another MRI. Anyone who says there are no side effects and that it is “harmless” has apparently never had a brain scan.) The results, of course, of the MRI were “normal.”

      B12 and B1 came back “normal”, but my vitamin D was very low. Still, I was convinced that more was going on, even though I was in agreement that my vitamin D level would cause many of my symptoms. I was prescribed 50,000 IU vitamin D3 once weekly for 13 weeks.

      As a side comment, I will add a note that I had an extreme adverse reaction to this supplement, which sent me to the ER. The morning after the first night I took this, I felt a wave going up to my brain and it felt like my brain “swelled” for a few seconds (I described it in the ER as it feeling like a mini-stroke – which I have never had but it’s what I imagined one to feel like – after which I experienced extreme lightheadedness and dizziness, inability to focus or concentrate, racing heart, excessive perspiration. As it turns out, almost all vitamin D3 supplements are made from lanolin, which comes from sheep glands. I am allergic to wool. No one – not my doctor or anyone in the ER – knew this or gave any indication that there was a connection to vitamin D with my reaction, even though I suggested it more than once. It was the only thing I had done differently, yet not one person gave it a consideration. It wasn’t until I went home afterwards and looked up the ingredients that I found out that vitamin d3 supplements are almost *always* from lanolin! A typical supplement for a woman my age is 600 iu… so 50,000 iu was an extreme amount for someone with an allergy to lanolin to take!

      Back to other tests… My doctor finally relented when I pressed her to order a ferritin test. Ferritin is the storage of iron in your body. It came back also very low, even though my CBC had been “normal.” (For reference, my level is a 10. For my age, the ideal level is about 50! At the very least, it should be 20, but preferably closer to 40 or 50.)

      I put “normal” above in quotes because it is important to understand the difference between normal, typical, and ideal. Labs provide a range for test results, but that doesn’t necessarily mean that your results are “normal” and it certainly doesn’t always mean your results are IDEAL.

      I urge you to do plenty of research on deficiencies of vitamin D (which is actually a hormone, not a vitamin) and iron (ferritin), and also thyroid issues. Similar to a CBC not always uncovering an iron deficiency, a TSH does not give the whole story about thyroid issues. You might ask for a full thyroid panel, which is much more detailed.

      It is important to note that vitamin K (preferrably K2 in the form of MK7 – read about that also) should be taken with vitamin d3 in order for your body to absorb it better. Also, vitamin C should be taken when you consume iron (if you are deficient) to best absorb it.

      You might also read about the potential connection between vitamin D deficiency and MS and other auto-immune disorders. (I have fibromyalgia and one of the reasons my doctor ordered a brain MRI was to rule out MS or brain tumors. Also, read about the connection between iron and vitamin D deficiencies, as well as B12.

      I’m providing links below for several places I read about a lot of health concerns, nutrition, etc. because I do not always (or even usually) agree with western medicine approaches. Dig a little deeper and be your own advocate. Your body will give you an idea of what your problems (deficiencies) are. I would also encourage you to avoid sugar since you know from your own experiences that it triggers a relapse. You might want to consider the anti-inflammatory diet on Dr. Andrew Weil’s website. I felt amazing – and I do mean amazing – after following it just for 30 days! And if you drink pop – regular or diet – STOP.

      Very best wishes to you. I hope something helps you and that you identify the underlying cause of your health issues!

      Kim

      http://articles.mercola.com/sites/articles/archive/2009/07/14/little-known-secrets-about-optimal-iron-levels.aspx

      http://articles.mercola.com/sites/articles/archive/2014/05/28/vitamin-d-deficiency-signs-symptoms.aspx

      http://www.drweil.com/drw/u/PAG00361/anti-inflammatory-food-pyramid.html#_ga=1.214162071.1094172659.1457721049

      http://www.healthline.com/health/ferritin#Purpose3

      http://drhedberg.com/the-ferritin-test/

      http://hypothyroidmom.com/

      http://hypothyroidmom.com/300-hypothyroidism-symptoms-yes-really/

      http://hypothyroidmom.com/top-5-reasons-doctors-fail-to-diagnose-hypothyroidism/

      http://www.drweil.com/drw/u/QAA400683/Vitamin-D-Deficient.html

      http://wellnessmama.com/15/harmful-effects-of-sugar/

      1. Let me first of all comment on the post from Cathy. At the age of 62 years she has had repeated illnesses in which she suspects “that I have problems with B vitamins “. She mentions a “sensitive blood sugar” involving night eating and has experienced what she calls “anxiety and depression”. The thing that I find so depressing is that she “resumed sugar”, even though she suspected some kind of connection. Let me be clear about thiamine deficiency in a case like this. We have known since 1936 that sugar will induce thiamine deficiency and that taking sugar in the way we take it in America is producing a vast amount of illness. Unfortunately, because of the crass ignorance in the medical profession the symptoms that are generated are referred to as psychosomatic. The reason for this is that the laboratory studies, including thiamine concentration, in the blood are all normal. The idea of nutritional disease is so foreign in America that the proper lab studies to define it are not even being thought of. The trouble with this is that the symptoms are so easily reversible if they are recognized when they first occur. If the malnutrition continues to exist, the symptoms will increase in intensity and eventually will become irreversible. If we take the model of the vitamin B1 deficiency disease known as beriberi, we have known for years that it takes huge doses of thiamine to relieve symptoms. To continue to take sugar under these circumstances is obviously absurd. However, self-discipline is also a function of the brain and thiamine deficiency will affect that. Cathy should do two things: 1. Absolutely no sugar of any form whatsoever, 2. Insist from her doctor that she has severe thiamine deficiency and requires large doses of thiamine and magnesium. The reason for magnesium is that it works with thiamine.
        Now let me comment on the post from Kim who records similar symptoms. Concentrations of B12 and B1 were described as normal and this is not the way to depict vitamin deficiency anyway because they can be perfectly normal in the presence of deficiency. The vitamin D was an exception. Another important bit of information was the low ferritin. This would affect mitochondrial function as well as affecting hemoglobin content and iron is an obvious nutrient. I have long been concerned over the relationship between thyroid and thiamine deficiency and what on earth is “an anti-inflammatory diet”? The only natural substance that I know of that we take as a regular part of diet is, of all things, sugar!!

        Fuel plus oxygen plus catalyst equals energy
        Gasoline plus oxygen plus spark plug equals energy

        The principles are the same but the details are widely different. Thiamine is just like a spark plug and when it is deficient, oxygen cannot be used to create energy. The cells where this takes place die. The word hypoxia is used in medicine to describe lack of oxygen to the tissues, particularly the brain. For this reason thiamine deficiency is sometimes referred to as pseudo-hypoxia (false lack of oxygen).
        Glucose is the fuel that the brain uses and it is difficult for most people to understand that sugar is dangerous. This is basically because the absorption of natural sugar, obtained strictly from fruit and vegetables, goes through an extremely complex process before glucose is derived from the sugar. Unfortunately the food industry is our enemy, it only wants our money and sweet, sweeter, sweetest sells.

          1. Yes sounds like b6 toxicity cathy! I have had that and had all her same symptoms and the neuropathy us heck. I’m still trying to heal.

  27. Is there any way to get in direct contact with Dr Lonsdale? My son has episodes of very odd behaviour linked to smelly urine and now has episodes of gulping for breath with blue lips which leads to pressured speech and what looks to us like brain inflammation.
    We had the erythrocytes test done at Biolabs some years ago and it was borderline.
    I have an enlarged heart and atrial fibrillation and worked out for myself that it was thiamine deficiency, and take benfotiamine and mag and other supplements. I am sure this has saved my life.
    However, all attemps to get the NHS to look at me and my son to see iii there is a link are meeting with brick walls.
    Can you recommend a course of action?
    My son is 53 and has been diagnosed with Asperger’s although others think he has mito dysfunction, the NHS will not accept this or refer him to its expert centre,
    He cannot tolerate fish oils without carnitine and does not tolerate glutathione or NAC.
    He does very well on thiamine and it seems to be able to stop the panting. Mag. And MCT seem to have an effect.

    1. I contacted Christine and have received a reply which gives more details than this post. It is an extremely fascinating and interesting example of how wrong the present medical model is. The story in this man actually begins at birth and for 50 years his mother and he have struggled with the situation that seems to have generated an idea that his “psychology” was in some way inventing his symptoms. It is generally misunderstood that vomiting in the newborn of this nature often means that there is dysfunction in the part of the brain known as the brainstem, the part of the brain that connects with the spinal cord. So infancy vomiting is the first clue since a deficiency of thiamine would provoke it. Many clues followed through the intermittent illnesses that have cursed him with a diagnosis of psychosomatic disease. I asked Christine to try to describe the odor of the urine in her son and she had already jumped to the conclusion that this was the characteristic odor of maple syrup urine disease (MSUD), known to be due to a defect in an enzyme that requires thiamine. She reported that this disease had been looked for and the tests were negative. Although the disease had been thought to be purely genetically determined, it has also been described as thiamine dependent and intermittent, meaning that episodes of brain illness recur under the stress of a simple infection like a cold, mild head injury or even an inoculation. The patient may be normal or very near normal in between episodes of brain illness, each resulting in peculiar and abnormal behavior that may vary in detail. An episode of illness can occur spontaneously from an unknown stress factor or even from simple exposure to sunlight. The next major clue is a report that Christine would not have dreamed of being so important. She told me that her son had an organism in the bowel called Clostridium “200 times the normal concentration”. Certain members of this bacterial species are capable of producing an enzyme called thiaminase 1 (EC2.5.1.2). This enzyme, produced by the organism in the bowel, splits the dietary obtained thiamine molecule, rendering it biologically useless. Thiaminase disease has been described in Japan as a cause of thiamine deficiency. It has also recently been found that thiamine dependent disease can occur because of things called SNPs in a protein that is responsible for creating a transporter system in the body that enables thiamine to enter the cell. This would create what might be called genetic risk, rather than a genetically determined disease, if SNPs are present.
      Conclusion: Christine has thiamine dependent heart disease that she was smart enough to spot by herself. Her son has thiamine dependent brain disease. There is enough information to suggest that her son inherited a genetic risk factor that makes the absorption of thiamine more difficult such as SNPs. You add to that the Clostridium in the bowel may be a thiaminase I producer that would also add to the sum of risk factors. This should give rise to other questions on this website because the idea looks so “out-of-the-box” that the analysis of this disease might be subject to doubt if not scorn.

  28. Unfortunately Bio Lab in London and Cleveland Clinic do not do the second part of the lab test that specifically addresses the thiamin deficiency issue. The first part of the test involves the baseline activity of an enzyme in red blood cells that depends on thiamin. This activity only declines with serious and prolonged deficiency and is frequently normal when the second part of the test clearly shows deficiency.

    1. OK….facinating reading. My otherwise healthy and very active daughter received her third Gardasil shot during her freshman year of high school. Her health declined precipitously and she was diagnosed with Graves Disease (Hyperactive thyroidism) about 3 months following the shot and she developed a condition where she would faint whenever she laughed. This was diagnosed as cataplexy only after we put her symptoms together and told the doctors what she had. This was after mopnths of numersou doctors who could’t figure iot out. so, following a comprehensive sleep study she’s diagnosed with severe narcolepsy and extreme cataplexy. Her short term memory is severly affected as well. How do I get a TKA test? And once I do, what’s the best treatment? I have her now seeing a NRT Chiropractor who has increased her energy level with diet modification and suplements. I really beleive the Thiamin is the key.

      1. Unfortunately, this is yet another example of my belief that the present medical model is catastrophically wrong.There are a number of posts on this website that indicate that Gardasil is a very dangerous vaccine, but only under certain circumstances. All the young women that have been reported to me with illness following the vaccine were all excellent athletes and students. This strongly suggests that their genomic characteristics code for a high rate of brain activity, commonly described as a high IQ. It is common sense to assume that they are at risk because they require a pristine diet in much the same way as a high powered engine in a car requires superior gasoline. Several of the girls that have come to my notice have been found to have SNP’s in their genome that provides them with a genetically determined risk. SNP’s are minor changes in the DNA sequence and do not by themselves produce disease. The vaccine appears to be a stress factor on top of these independent associations and probably explains the relatively small number of individuals affected by the vaccine. I have come to the conclusion that these affected individuals have been consuming a diet with too many empty calories, particularly those from simple carbohydrate. That is why thiamine deficiency, asymptomatic or inconsequential before vaccination, is precipitated and causes devastating disease.

        1. I’m very interested in the transketolase test. Where can we go to have this test done? Over a year ago, my eighteen year old son, had two injections of Gardisil. Before the 2nd injection he was the top long distance cross country runner of his high school, top ten honor student.Unfortunately, 15 days after that 2nd injection he couldn’t run due to dizziness, muscle weakness, and nearly blacking out. He started failing school due to extreme fatigue, brain fog,and sleep spells(Neurologist diagnosed him with Idiopathic Hypersomnia). I’m really concerned about a possible Thiamine deficiency and POTS as explained in the articles. Where can we get the transketolase test done? We are desperate for help as the doctors here aren’t helping they just keep putting him on amphetamines and antidepressants. Please let us know. Thank You!

    2. Hello I’m trying to reach Dr. Lonsdale. My son Solomon Cotton was a Patient of yours. I need your help to find another lab where he can have his testing done in regards of transketolase levels and where can I find the authia cream you prescribe to Solomon. Solomon needs your help Dr. Lonsdale!

  29. Hi, anyone know of any other labs in america that does this test. It is urgent as my family and i want to address my problems and symptoms as soon as possible. It has been 4 years since my gardasil vaccine.thank you

    1. Unfortunately, the only lab in the US shut down recently. We have tried to cultivate other resources, but so far no luck. There is a lab in London called BioLabs that has version of the test, which may be an option for you. If you read Gabriella Chow’s story, she was faced with the same difficulty finding a lab in AUS. She ultimately, worked with a physician to begin treating the thiamine deficiency without the testing – because she couldn’t get tested. Be advised though, if you choose this route, you should do so under the care of a physician, as there are paradoxical reactions and dosage issues that must be worked out and can be dangerous if not monitored appropriately.

  30. I have just received an e-mail that states that King James Lab (1-888-WSTLAKE) is resuming the transketolase test.

  31. I want to make a comment on the use of transketolase in defining thiamine deficiency. The Mayo Clinic has indicated that this is a non specific test and that blood thiamin is the way to go. Unfortunately, this is nonsense. You can have a normal thiamine level in the blood and still be deficient. Measuring the activity of the transketolase enzyme in red blood cells before and after the addition of thiamin pyrophosphate, it’s biologically active form, gives a perfect method of identifying thiamin deficiency. Unfortunately, because nutritional deficiency is considered to be only of historical interest, that test is insufficiently known and has been confined to the activity of only one lab in the United States. This lab is in the process of reorganizing and the test should be available later. I have done this test thousands of times and I know very well that vitamin B1 deficiency is extremely widespread in this country. The major culprit is the enormous amount of sugar that is ingested by literally millions of people. An excess of sugar overloads the capacity of vitamin B1 to process it. It is as simple as that.

  32. Peggy,
    A regular plasma thiaimine test will not show thiaimine deficiency. My daughter’s plasma thiamine test actually said her thaimine was normal but when we ran a Transketolase test it indicated she was severely thiaimine deficient. You can get the Transketolase test done thru King James Labs in Westlake, Ohio. Treating my daughter’s thiamine deficiency has made a big difference in her health.

  33. There is only one lab that does transketolase. Have your doctor call 1-888-WSTLAKE for instructions on how to send the blood

  34. My daughter had blood work done for what I thought we asked for was them to check to see if her Thiamine was low due to all the issues she is having. She asked for her transketolase be checked and they said they couldn’t do that and the are doing B1 testing only and said that is the back door way. Does that make any sense to anyone, as it does not to me. This has been going on for 8 months and every test possible and still no answers. I hate levaquin….

    Her story can be read here: http://www.hormonesmatter.com/levaquin-temporal-lobe-symptoms/

  35. Dr. Driscoll, your mention of “genetic disorders of clotting” makes me wonder if my inherited low platelet count has anything to do with my adverse reaction to Cipro (a fluoroquinolone antibiotic). As Dr. Marrs pointed out in an earlier article on HM, there are an awful lot of similarities between those suffering from an adverse reaction to fluoroquinolones and those suffering from an adverse reaction to Gardasil, Lupron, etc. If anyone has any thoughts on this potential connection, I’d love to hear them. Also something to note, Anemia was one of my many symptoms of Fluoroquinolone Toxicity.

  36. How does this effect someone with Dihydropyrimidine dehydrogenase deficiency? Which is an is an autosomal recessive[1] metabolic disorder in which there is absent or significantly decreased activity of dihydropyrimidine dehydrogenase, an enzyme involved in the metabolism of uracil and thymine.

  37. As far as I know, there is only one lab that does TKA and that is assessable by calling 1-888-WSTLAKE for instructions on mailing. For interpretation look up one of my articles recorded in Pub Med

  38. Oh, I found it! The King James Medical Lab… Thank you for providing this information. May I add one other thought? I see that this vaccination can cause blood clots. A clot in the transverse sinus (most common location, I believe) or nearby sinuses, can be a cause of neurocardiogenic syncope — often confused with POTS (which is often confused with dysautonomia). My son experienced this, but it was missed by dozens of doctors. I wonder if a screening for genetic disorders of clotting may be in order if the patient presents with fainting (as opposed to dysautonomia — which affects the function of numerous organs)? I believe the distinction between “POTS”, “dysautonomia” and “cardioneurogenic syncope” is crucial in these cases.

    1. Diana,
      That is fascinating. Would you be interested in writing a post for us on clots in the transverse sinus – clotting disorders- neurocardiogenic syncope? I think we may have some cases of that, undiagnosed. The information would be most useful to our readers.

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